Who Can't Habituate or Can't Be Helped By TRT?

[linearb]

It is 2015 b...y f...g hell, and we still can't target this T directly. You have to do CBT you need to do all other sort of tricks to only learn to accept that this is you to the end of your poor existence. It is like you have a headache and you doctor is keep telling you "Sorry its nothing could be done learn to live like this".

Lots of people do have headaches that doctors cannot help.

Anyone who lives long enough will experience physical problems that medicines can't fix.

What good does it do to cover your ears with your palms all day?

 

[Dr. Nagler]

... TRT is expensive, and it is not always easy to find someone who knows what they are doing. But there are cheaper options. One of them would be to acquire Jane Henry and Peter Wilson's book Tinnitus: A Self-Management Guide for the Ringing in your Ears (about $70 on Amazon right now) and to work one's way through all the exercises in it that are practical and designed to promote habituation. I'd recommend doing them systematically twice.

It is indeed an excellent book. Today used copies are $80 on Amazon, and new copies are $190. The prices fluctuate quite a bit because the book, which originally cost $25, is completely out of print and unavailable through traditional retail markets.

I also agree with Sleaford regarding how to use the book. Go through each and every exercise, writing down your answers - do not just do them in your head. And then repeat the entire process a few weeks later.

Friends, I can provide a copy (as in "copy") of the book at no charge whatsoever to anybody who is interested and sincere. There are copyright concerns in doing so, however, and I do not wish to involve the Tinnitus Talk platform in any way - even through the board's PM function. So you will need to contact me totally independent of the board if you wish to have one.

 

[Vincent R]

My reaction **does NOT** matter, T is killing me -- not my reaction or attitude about it.

T is a physical ailment, period. I don't understand why everybody is trying to sell us psychology. Maybe cos there's nothing else hence playing the psych card?

Sound about right. I think TT is an excellent community, but once you've chewed yourself through the main information available here, the discussions will move in circles. If there's such a thing as a next step for the T-world, it will probably be when the pharmaceuticals working on reducing T hit the market within a few years. Until then we're all doomed to read about scienctists living out their need to do bizarre things with mice.

Honestly, it wasn't how I had visualised my future.

 

[NiNyu]

The reason why psychology is 'sold' is because it can bring significant relief.

I can now go for several hours, sometimes most of the day, without even hearing my tinnitus.

No. The reason why psychology is *sold* for T is cos there's absolutely nothing else. Always when there's nothing else left they play the psych card! Psychology may work on other physical ailments but it will not work with killer reactive T.

You state that there are moments where you do not hear your T, what can that mean? Either your T is merely whimsical or it's probably not **killer reactive**.

Hang yourself is by far the worst method one could choose. There are more reliable methods and less painful.

If you can still read books (which I can't do anymore) maybe your in a much better world than most of us who are in pain, literally pain every day.

It's not surprising that psychology works on phobias. Fear is a mental issue and not a physical one but the symptoms can be physical like sweating, a raised heartbeat etc. Now if you told me that T is merely the symptom of fear, I'd say of course psychology could have an impact.

 

[Dr. Nagler]

Psychology may work on other physical ailments but it will not work with killer reactive T.

Psychology sure worked for @Sleaford Mod. Thanks to psychology, he has morphed from a man who was crippled by severe killer tinnitus into a man who lives a normal life and happens to have tinnitus. I'd say that's pretty remarkable. Or are you suggesting that the reason psychology worked for him was that his killer tinnitus just wasn't "killer" enough?

 

[Telis]

No. The reason why psychology is *sold* for T is cos there's absolutely nothing else. Always when there's nothing else left they play the psych card! Psychology may work on other physical ailments but it will not work with killer reactive T.

You state that there are moments where you do not hear your T, what can that mean? Either your T is merely whimsical or it's probably not **killer reactive**.

Hang yourself is by far the worst method one could choose. There are more reliable methods and less painful.

If you can still read books (which I can't do anymore) maybe your in a much better world than most of us who are in pain, literally pain every day.

It's not surprising that psychology works on phobias. Fear is a mental issue and not a physical one but the symptoms can be physical like sweating, a raised heartbeat etc. Now if you told me that T is merely the symptom of fear, I'd say of course psychology could have an impact.

Yeah I agree, psychology can only help so much, tinnitus is not just a bad reaction (mental issue), in some cases yes, but sometimes there is more to it than this. I'm very thankful that there are some very smart folks that understand this and are working on legitimate treatments. Until then be prepared to have the finger pointed at you and told that you are the problem and not your condition. Reaction is a part of the puzzle yes, but not the be all and end all like some people here like to pitch endlessly. Maybe some day the blinders will come off and tinnitus will be taken seriously by more, until then, wade through the BS the best you can, work on your reaction, try and distract yourself, and if you still suffer, don't let people make you feel like a hopeless mental case that is bent on suffering, T and H are hard enough to deal with without being ridiculed and blamed.

Take care.

 

[Danny Boy]

Yeah I agree, psychology can only help so much, tinnitus is not just a bad reaction (mental issue), in some cases yes, but sometimes there is more to it than this. I'm very thankful that there are some very smart folks that understand this and are working on legitimate treatments. Until then be prepared to have the finger pointed at you and told that you are the problem and not your condition. Reaction is a part of the puzzle yes, but not the be all and end all like some people here like to pitch endlessly. Maybe some day the blinders will come off and tinnitus will be taken seriously by more, until then, wade through the BS the best you can, work on your reaction, try and distract yourself, and if you still suffer, don't let people make you feel like a hopeless mental case that is bent on suffering, T and H are hard enough to deal with without being ridiculed and blamed.

Take care.

Personally, I think reactive tinnitus and hyperacusis can destroy your life far more than normal tinnitus, as that's maskable...But what do you do when white noise generators are useless, when fans are making your tinnitus compete with it? I'm telling you, it's hell. If someone says it's your reaction they can fudge off, my reaction is, if you fat cats got off your asses and sorted this out, we wouldn't be in this mess! Tinnitus isn't that hard to treat! We knew about the role KV3 modulators played in tinnitus for ages! And I mean ages! So you know who's fault it is? The ATA, the BTA and the blooming medical community! The BTA are still going on about the model of tinnitus!? We know it's in the brain and we know the KV3 channels have a role, so spend some dosh and help treat us...Sorry, rant over.

 

[Dr. Nagler]

T and H are hard enough to deal with without being ridiculed and blamed.

I've been on this board for some 16 months now, and I have never seen anybody ridiculed here for having tinnitus. I have seen people ridiculed here for trying to help and make a difference. I have seen people ridiculed here for having overcome their tinnitus (like if you overcame it, then it couldn't have been that bad in the first place.) But I have never seen anybody ridiculed here for having tinnitus. Tinnitus is not a choice. Nobody asks for it, and nobody wants it.

 

[Carm]

I've been on this board for some 16 months now, and I have never seen anybody ridiculed here for having tinnitus. I have seen people ridiculed here for trying to help and make a difference. I have seen people ridiculed here for having overcome their tinnitus (like if you overcame it, then it couldn't have been that bad in the first place.) But I have never seen anybody ridiculed here for having tinnitus. Tinnitus is not a choice. Nobody asks for it, and nobody wants it.

I have found myself thinking why that is.

shouldn't everyone be happy if someone overcomes their tinnitus? where's the empathy? why the need to say someone their tinnitus can't be that bad? everyone should mind their own business...

most writers here are kind to others but a few are not ..

 

[Dr. Nagler]

shouldn't everyone be happy if someone overcomes their tinnitus? where's the empathy?

Carm, some people are so totally miserable that they cannot share in the joy of others. I understand that. At one time I was suffering so severely that I felt exactly the same. But what I did not do is deride those who overcame their tinnitus or minimize the significance their accomplishments. Those who do so help nobody, least of all themselves.

I guess the coward's cloak of anonymity afforded by the Internet empowers some people to say and do things they would not otherwise say or do. Fortunately those people are few and far between.

 

[tinnitussufferer]

TRT is basically a form of subterfuge. And just like all subterfuge, it does work on some people but others are not so easily fooled.

 

[Dr. Nagler]

TRT is basically a form of subterfuge. And just like all subterfuge, it does work on some people but others are not so easily fooled.

If TRT has "fooled" me into going from the absolute depths of misery and despair from loud screaming incessant tinnitus to leading a full and pleasurable life with that very same tinnitus, then I'll happily be fooled. I look forward to each day, whereas I used to dread it. What's wrong with that?

In Post #68 I commented about about those who ridicule others who have overcome their tinnitus. You are a prime example of exactly what I was talking about. I get the fact that you are suffering, suffering so much so that you felt compelled to include it in your tinnitussufferer nick. I feel terrible about the fact that you are miserable. I really do. But misery can be contagious. And that's where I draw the line.

 

[MattK]

TRT is basically a form of subterfuge. And just like all subterfuge, it does work on some people but others are not so easily fooled.

You almost sound like you're proud of the fact that you haven't habituated as if not habituating proves you're not gullible or something.

But, if the alternative to being "fooled" is a lifetime of misery, then I'd gladly be fooled!

 

[tinnitussufferer]

But misery can be contagious. And that's where I draw the line.

I want my silence back. Not only when I just want to sit and think but also during the night when I want to rest.
I would suggest that part of the reason you appear to get so irritable and are quick to snap is that you are still treading on eggshells. What TRT does is suppress your irritation. But as with any emotion that you suppress it will eventually come back even stronger at some point. This would explain why people may report feeling better after TRT.

 

[Beth]

I want my silence back. Not only when I just want to sit and think but also during the night when I want to rest.
I would suggest that part of the reason you appear to get so irritable and are quick to snap is that you are still treading on eggshells. What TRT does is suppress your irritation. But as with any emotion that you suppress it will eventually come back even stronger at some point. This would explain why people may report feeling better after TRT.

I have very loud tinnitus which is there all the time but most of the time (about 95%) I have silence because when I'm not thinking about it it's not there. I am definitely not suppressing emotions about it. I was extremely distressed for years and often felt suicidal and my emotions were certainly all out in the open then, and they still are. The tinnitus has not changed at all, in fact if I study it, which I very rarely do, I think it is probably louder but my reaction to it has changed so I do not give it any attention and therefore seldom hear it. I have just been sitting reading in silence and only became aware of the tinnitus when I started to write this! I agree that suppressed emotions do come out in some form sooner or later but strongly believe that my emotional reaction has changed, which is an important difference from being suppressed. Just a thought FWIW.

 

[tinnitussufferer]

I have very loud tinnitus which is there all the time but most of the time (about 95%) I have silence because when I'm not thinking about it it's not there. I am definitely not suppressing emotions about it. I was extremely distressed for years and often felt suicidal and my emotions were certainly all out in the open then, and they still are. The tinnitus has not changed at all, in fact if I study it, which I very rarely do, I think it is probably louder but my reaction to it has changed so I do not give it any attention and therefore seldom hear it. I have just been sitting reading in silence and only became aware of the tinnitus when I started to write this! I agree that suppressed emotions do come out in some form sooner or later but strongly believe that my emotional reaction has changed, which is an important difference from being suppressed. Just a thought FWIW.

So you would be happy to live with it then? even if a cure was found?

 

[linearb]

after reflection, my cynical answer to the question here is "people who are unwilling or unable to change the way they think"... and I think that's also the answer to the questions, "who suffers the worst with any chronic illness", "who experiences the most existential angst as they age", and "what sort of people are the least interesting and most annoying to try to have any kind of intellectual debate with".

 

[Leah]

Heading to Philadelphia to see Dr. Brenner for TRT

 

[dan]

I have very loud tinnitus which is there all the time but most of the time (about 95%) I have silence because when I'm not thinking about it it's not there.

I am not trying to ridicule you or take away your achievment, BUT,
You do NOT have loud tinnitus. Maybe it was loud in the beginning and got quieter on its own over the years....but its not loud anymore, and I'm happy for you.

 

[linearb]

I am not trying to ridicule you or take away your achievment, BUT,
You do NOT have loud tinnitus. Maybe it was loud in the beginning and got quieter on its own over the years....but its not loud anymore, and I'm happy for you.

You can keep saying this all you want, but it's not true, and it just means that you don't really understand anything that's been posted here. I wish I could explain it better than that, or sound like less of a dick, but I don't know how to do either of those things.

 

[Beth]

I am not trying to ridicule you or take away your achievment, BUT,
You do NOT have loud tinnitus. Maybe it was loud in the beginning and got quieter on its own over the years....but its not loud anymore, and I'm happy for you.

My tinnitus has NEVER, EVER got any quieter. At first it was very quiet and I reacted really badly and thought it was impossible to live with, so because of my great fear and reaction, it got louder. That has been the pattern for 7 years so DO NOT tell me I do not have loud tinnitus. I still have difficulty hearing voices on the phone because I cannot lip read and I have never been in any situation for the last 5 years or so, where I cannot hear it. I was on an indoor steam driven fairground ride which made most people cover their ears and I could still hear it. The shower never covers it either, as it can with a lot of people. I am just so sorry that it took me so long to realize that it was entirely my fault that it got louder because I reacted to it which gave my brain the message that it was to be feared, so it made sure I heard it louder and more often. For me, and I guess for a lot of folks too, not reacting is the only way to deal with it and though it is incredibly difficult, I absolutely believe that it is the reaction that causes the fear and stress, not the noise. I can rarely hear what people are saying unless they're in the same room and for years, every time I woke, I would have to go to the bathroom because the volume of it gave me such fear that I would vomit. So don't you dare presume that you know I do not have loud tinnitus. Maskers on full volume get nowhere near the volume I have in my head. It's a good job I'm too much of a lady to tell you what I really think because if I wasn't I'd say f**k you. You're just making it more difficult for other sufferers to accept that really loud persistent tinnitus can be overcome and I want them to know that it can.....and life can be wonderful again, with or without tossers like you. X

 

[MattK]

I am not trying to ridicule you or take away your achievment, BUT,
You do NOT have loud tinnitus. Maybe it was loud in the beginning and got quieter on its own over the years....but its not loud anymore, and I'm happy for you.

Dan, no one can hear each other's tinnitus. I have no doubt some are worse than others. I know mine isn't as bad as what a lot of people have. But I wouldn't presume to know whether someone had it loud or not. I can only take their word for it because they are literally the only person in the world who can hear it.

But as I've said before, the type of argumentation you use is circular. Dr. Nagler asked someone something like, "so no matter what, if someone can climb to the top of a mountain then it's not that high?" And the person responded with "yes".

In other words, if someone can habituate to tinnitus, then it's mild. And everything from that point on gets forced to fit that assumption.

 

[snow86]

Carm, some people are so totally miserable that they cannot share in the joy of others. I understand that. At one time I was suffering so severely that I felt exactly the same. But what I did not do is deride those who overcame their tinnitus or minimize the significance their accomplishments. Those who do so help nobody, least of all themselves.

I guess the coward's cloak of anonymity afforded by the Internet empowers some people to say and do things they would not otherwise say or do. Fortunately those people are few and far between.

I think it's more about the usual opposing opinions on internet forums.
Everyone thinks he is right...but here is more to it.

Lets say someone wo overcame "mild" (whatever mild is...= one high pitched sound) tinnitus by habituation (trt + time) goes on the internet and sees some threads posted by people, who have really severe life threatening tinnitus (several loud alternating sounds, hyperacusis and stuff + depression) and can't habituate (yet?) . Now the Person, who overcame his/her "mild" tinnitus starts posting or more forcing his opinion on those who have that really severe tinnitus and writes stuff like "THIS HERE WORKED, I DID IT SO YOU CAN DO IT DO!!"...Well what do you expect then? Obviously you cant compare both situations, because one is less severe...so I would feel pissed too.

And I've been/still am in the situation where I experience both..."normal" Tinnitus,(one loud high pitched sound) which I habituated to, altough it was very hard. Lived good with it for almost 8 Years. Now I have multiple very loud, low and alternating Sounds...these are beyond imagineable and pure horror. The normal T is a cake compared to this and I know it because I experience this daily. But how can a person with "normal" T know this?

Im happy for everyone who "did it" and overcame the T...but sometimes people should check if they're not offending other people, who have it worse by giving "absolute" opinions like "TRT WORKS!!"
In my case, I think Mr.Naglers use of sarcasm in almost every thread is very misplaced (see my support thread)

to summarize this thread in a stupid way : "tinnitus is not a competition - but Im winning" (whatever that means lol)

 

[linearb]

TRT is basically a form of subterfuge. And just like all subterfuge, it does work on some people but others are not so easily fooled.

Yes, clearly people who actively resist cognitive practices, do so because they're just smarter than the rest of us

Is all that intelligence making you happier?

 

[linearb]

Lets say someone wo overcame "mild" (whatever mild is...= one high pitched sound) tinnitus by habituation (trt + time) goes on the internet and sees some threads posted by people, who have really severe life threatening tinnitus (several loud alternating sounds, hyperacusis and stuff + depression) and can't habituate (yet?) . Now the Person, who overcame his/her "mild" tinnitus starts posting or more forcing his opinion on those who have that really severe tinnitus and writes stuff like "THIS HERE WORKED, I DID IT SO YOU CAN DO IT DO!!"...Well what do you expect then? Obviously you cant compare both situations, because one is less severe...so I would feel pissed too.

you're falling into the same basic trap that lots of other people are here, which is starting with the (almost certainly true) basic premise that "milder tinnitus is easier to live with", and then making the completely baseless leap to the conclusion "anyone who is able to live with their tinnitus and still claims a high quality of life, has mild tinnitus".

Let's break this down:
A: mild tinnitus
~A: severe tinnitus
B: tinnitus which is easy to habituate to
~B: tinnitus which is hard to habituate to
C: having a high quality of life
~C: having a low quality of life

I think that we all agree, A -> B and B -> C
What we disagree about is twofold,
~A -> C and ~B -> C

you are of course right that these are emotionally complex issues, and there's no "tautological truth", in that what works for one person must inherantly work for another.

The reason that some people here find this irritating and difficult to have a rational conversation about, is that your viewpoint ends up saying "LOUD TINNITUS IS IMPOSSIBLE TO HABITUATE TO, AND THEREFORE IF YOU WERE ABLE TO HABITUATE YOU DON'T HAVE LOUD TINNITUS!"

Look at Beth's post -- hers is so loud that it can't be masked by a shower, can't be masked by dangerously loud environments, can't be masked by anything! And yet she says that she has a high quality of life, and doesn't hear it 95% of the time. And you're basically telling her that she's lying to us... you're projecting your own experience of your life, onto someone else's experience of their life, and telling them "no, you're wrong, you didn't suffer and your tinnitus is not loud." Is it any wonder she told you to fuck off? I would, too!

 

[Dr. Nagler]

I want my silence back.

And I want you to have your silence back. I want it to happen for you tomorrow. Or if not tomorrow, then the day after that. Or the day after that. But the harsh reality is that even five years from now it is not likely that you will have your silence back.

Here's another reality A good one. The opposite of silence is not endless abject misery. There are many things that can be done to significantly decrease one's suffering even in the absence of the silence one seeks. Not necessarily eliminate that suffering, of course, but for sure to decrease it.

I would suggest that part of the reason you appear to get so irritable and are quick to snap is that you are still treading on eggshells.

No. The reason I am so irritable is that some people on this board - maybe a dozen - are so incredibly unkind. Tinnitus may give you license to be miserable. But it does not give you license to be unkind.

 

[Beth]

So you would be happy to live with it then? even if a cure was found?

I don't really know. It's not really an issue any more but maybe like headaches (which I get only a few times a year) given the choice of keeping the headaches or not, I'd be silly to say I'd still have them if they could be eliminated and I suppose my attitude to tinnitus is the same. Strangely enough, it was only when I stopped hoping for a 'cure' that I began to make progress. It was very slow progress with many ups and downs but I feel I want to stick around here to help other people who like me, believed that very loud tinnitus can not be overcome. Hope this answers your question.

 

[linearb]

I don't really know. It's not really an issue any more but maybe like headaches (which I get only a few times a year) given the choice of keeping the headaches or not, I'd be silly to say I'd still have them if they could be eliminated and I suppose my attitude to tinnitus is the same. Strangely enough, it was only when I stopped hoping for a 'cure' that I began to make progress. It was very slow progress with many ups and downs but I feel I want to stick around here to help other people who like me, believed that very loud tinnitus can not be overcome. Hope this answers your question.

I think you just nicely illustrated the other cognitive trap that some people keep falling in to, which is "if you live a good life with your tinnitus then you literally wouldn't get rid of it if you could". And this one, just seems idiotic to me. I'm in my early 30s and I've lived enough to have a bunch of irritating issues: long-standing on-and-off acne that didn't stop when I got out of my teens, knee pain that sometimes keeps me from being as active as I'd like to, neuromuscular problems with my hyoid bone that give me a "poked in the throat" sensation a lot of the time, chipped teeth, mild carpal tunnel problems, etc. If I could snap my fingers and magic away any of these problems, of course I would! That doesn't mean they prevent me from having a rich and full life.

 

[tinnitussufferer]

TRT/habituation is a funny thing. It claims to of tinnitus but the loudness doesnt change?

I don't really know. It's not really an issue any more but maybe like headaches (which I get only a few times a year) given the choice of keeping the headaches or not, I'd be silly to say I'd still have them if they could be eliminated and I suppose my attitude to tinnitus is the same. Strangely enough, it was only when I stopped hoping for a 'cure' that I began to make progress. It was very slow progress with many ups and downs but I feel I want to stick around here to help other people who like me, believed that very loud tinnitus can not be overcome. Hope this answers your question.

if your answer to my question is that you dont know, then that is contrary to what we would expect because a minute ago you said you had severe tinnitus which you somehow overcame. In which case why would you be unsure about whether or not you would accept a cure? Clearly if you had overcome tinnitus, the answer would be that you would not care whether a cure was found or not and that even if it was found you would have no reason whatsoever to accept it.

If I could snap my fingers and magic away any of these problems, of course I would! That doesn't mean they prevent me from having a rich and full life.

But therein lies the wavering of peoples opinion of how badly their situation affects them. Since we dont currently have a cure, people exaggerate the relief that TRT brings them and downplays the need for a cure. That in itself is a form of a coping technique. Now when a cure finally does come along, they suddenly change their mind and say 'oh yes I would happily accept a cure without hesitation.' It seems to me this is sour grapes.

 

[Beth]

TRT/habituation is a funny thing. It claims to of tinnitus but the loudness doesnt change?

if your answer to my question is that you dont know, then that is contrary to what we would expect because a minute ago you said you had severe tinnitus which you somehow overcame. In which case why would you be unsure about whether or not you would accept a cure? Clearly if you had overcome tinnitus, the answer would be that you would not care whether a cure was found or not and that even if it was found you would have no reason whatsoever to accept it.

I'm not sure whether I didn't explain it well enough or whether you're just too thick to understand but I'll have another go. I get headaches several times a year and I can honestly say that they do not bother me or distress me one little bit and I spend no time at all worrying if they will get worse or become more frequent. They do not impact on my life; they are just there. BUT...if someone offered to wave a magic wand so that I no longer had them I guess I may say, 'OK, they're no big deal but now and again they're a bit annoying so although they don't in any way negatively affect my life, I'll let you wave the wand'. That is how I feel about my tinnitus and because I spent years in total distress and misery, I just appreciate life so much more, even more than I did in my pre tinnitus years and because I enjoy life more now, I can actually think that in a way I'm glad it happened because I did so many things to improve my health, lost weight, got fit, joined a yoga and meditation class and did all sorts of things I would never have done. My life is now SO much better but using the headache analogy, I may (or may not, as I do not feel strongly either way) take the choice of getting rid of it.

If you do not understand this, please ask someone else to explain because I have more important things to do. I wish you well but with your attitude you are going to find things very difficult....lighten up and stop trying to pick arguments when most people are only here to help.